CYSTITIS CYSTICA HELP

[TinaBa]

Cystitis Cystica (painful bladder cysts) inflammation, foul smelling urine, frequent trips to the toilet! Amongst many other things I've had this for many years. I would like to know what herbs or natural remedies anyone has had that has relieved or even better cured? Conventional medicine of 6 months anti biotics is a complete no for me!

[shaws Administrator]

I am sorry you have this problem, having just read about it. This is a link that may be helpful.

pubmed.ncbi.nlm.nih.gov/660...

[SeasideSusie Remembering]

TinaBa

I wonder whether a dedicated bladder forum might be able to help. There is one on HealthUnlocked:

healthunlocked.com/bladderh...

[SlowDragon Administrator]

Being inadequately treated for Hashimoto’s can be a trigger for more frequent UTI

Many members find they get more frequent UTI if thyroid levels aren’t optimal

TSH 1.51 [0.27-4.2]

fT3 3.64 [3.1-6.8]

fT4 17.7 [ ?-? ]

TPOab 101[>34]

Taking 100mcg Levothyroxine for many years.

Ft3 should be at least around 60% through range

Currently your Ft3 is far too low at only 15% through range

No range on Ft4 result so we can’t see if your under medicated.

Clearly Ft3 is ludicrously low

Likely very low vitamin levels

ESSENTIAL To test vitamin D, folate, ferritin and B12 at least annually

What vitamin supplements are you currently taking

Ask GP to test vitamins or test privately

all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Come back with new post once you get results

[TinaBa in reply to SlowDragon]

Thanks for the reply here are my recent bloods.

TSH

[SlowDragon Administrator in reply to TinaBa]

Very under medicated

Do you always get same brand of levothyroxine at each prescription

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

Ask for 25mcg dose increase in levothyroxine

Bloods should be retested 6-8 week’s after each dose increase

Just testing TSH is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels NOW

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[TinaBa in reply to SlowDragon]

Not sure where the other results are gone did you see them? Under medicated on Thyroxine?

I'm on Vitamin D drops 6000iu a day that's it

Also going through menopause thanks for your help

[SlowDragon Administrator in reply to TinaBa]

On levothyroxine TSH should ALWAYS be under 2

See GP for 25mcg dose increase in levothyroxine and request coeliac blood test, folate, ferritin and B12 tested

Are you on HRT?

[TinaBa in reply to SlowDragon]

Ok thank you. No I'm not on HRT. Did you see all the results?

[SlowDragon Administrator in reply to TinaBa]

No only TSH on there

[TinaBa in reply to SlowDragon]

I've posted all the results I'm not very good at this. The doctor won't help me as he says everything is normal. These results were last week and took blood in morning before any Thyroxine or food.

Thank you for helping me.

[SlowDragon Administrator in reply to TinaBa]

See different GP then

On levothyroxine TSH should ALWAYS be under 2

Ft4 15.1

Only 31% through range

Ft3 4.4

Only 35% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Results show you are under medicated

Most people need both Ft4 and Ft3 at least 60% through range

You’re a good converter of Ft4 to ft3......but not on high enough dose levothyroxine

Request 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks later

Also request GP test vitamin D, folate, ferritin and B12

[TinaBa in reply to SlowDragon]

What symptoms should I be experiencing from those results?What vitamins should I be taking with those results?

What is the extra 25mcg Thyroxine going to help with?

Thanks for your help

[SlowDragon Administrator in reply to TinaBa]

Ft4 result shows your dose of levothyroxine is inadequate

Dose of levothyroxine should be high enough to bring Ft4 at least 60% through range .....TSH will then reduce and Ft3 will also improve

Being on inadequate dose levothyroxine means that you are still slightly hypothyroid

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

When hypothyroid we frequently have low stomach acid, this leads to poor nutrient absorption and low vitamin levels

Common hypothyroid symptoms are high cholesterol, weight gain, feeling cold, low energy, depression etc etc

[SlowDragon Administrator in reply to TinaBa]

Many people also find repeatedly UTI are more common when under medicated for thyroid

[SlowDragon Administrator in reply to TinaBa]

Never take vitamin supplements without getting levels tested FIRST

Essential to test vitamin D, folate, ferritin and B12 at least once year

Come back with new post once you get results

Optimal vitamin levels are

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate and ferritin at least half way through range

Serum B12 at least over 500

Active B12 at least over 70

If GP won’t test vitamin levels get FULL thyroid and vitamin testing done 6-8 weeks after you get levothyroxine dose increase

[SlowDragon Administrator in reply to TinaBa]

You need TSH, Ft4 and Ft3

[SlowDragon Administrator in reply to TinaBa]

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

[e-mail]

[SlowDragon Administrator]

Do you always get same brand of levothyroxine at each prescription

Which brand

How much do you weigh in kilo approx

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[TinaBa in reply to SlowDragon]

I'm on Mercury 100mcg have been for years.

[SlowDragon Administrator in reply to TinaBa]

So Mercury make 25mcg tablets too...so that’s easy for next dose increase in levothyroxine

[SlowDragon Administrator in reply to TinaBa]

Approx how much do you weigh in kilo?

Guidelines on dose by weight is 1.6mcg levothyroxine per kilo of your weight.

Some people need higher doses

[TinaBa in reply to SlowDragon]

Too much lol expanded a lot! I'm sorry but got no idea have no scales but I would say 65.5 kilos approximately.

[SlowDragon Administrator]

Your high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.